I'm on the back burner again.

Three weeks or so ago, my son's epilepsy got worse. Grand mal/tonic clonic seizures increased to about 7-8 a week. He started regressing in maturity. Had to be pulled out of school after a big seizure there scared the teachers silly so no school for the rest of the year.

Finally have our diagnosis tho. PET/CAT/EEG on Mon Dec 3 showed the neurons in the right frontal lobe didn't form correctly in utero, plus he has lesions and a small tumor. Can't do much until seizures are under control so meds were upped, which did help (as shown on yesterday's EEG) but furthered his regression and also probably caused an odd-pattern swelling on his scalp. Decreased 1 med last night and will again tonight then will stop that med unless seizures come back. Am to keep a close eye on swelling.

SUDEP (sudden death in epilepsy) is a real possibility.

Meanwhile, yes, I'm dropping weight but not because I'm working at it. I'm taking my multi-vitamin, my meds, and trying to at least get a protein drink first thing in the morning. And a V8 at some point. The rest of the day is a crap-shoot.  The fresh veggies and fruit are going for my kid ... he's back to eating just about anything I put in front of him, and I need to give him an edge somehow to fight all of this. 

Please keep us in your thoughts.

Vee at Rosemary Ridge

No comments: